PDIA Recommendations to Grantmakers

Based on PDIA's nine years of grantmaking and the suggestions of the many grantees interviewed for this report, we have compiled the following recommendations to help other grantmakers. The following suggestions focus on areas of maximum leverage, where even modest philanthropic investment will yield significant impact. 

Any foundation-large, small, private, corporate, community, or family-can help improve end-of-life care for patients and their families. Regardless of geographic focus, grant size, or funding priorities, any foundation concerned with alleviating human suffering has a role to play-and in the end, every funder has a personal stake in the quality of the end-of-life care system we create.

Grantmaking to Improve Professional Education

Every grant made to support palliative care education for health professionals has a direct and immediate impact on care for dying patients and their loved ones. Philanthropic support at every level-whether a one-time grant that facilitates pain management training for a rural community doctor, or multi-year grants that establish new palliative care training programs-will have lasting impact in communities across the country.

PDIA's Faculty Scholars Program and the Social Work Leadership Development Awards have been exceptionally successful in developing physician, nurse, and social work role model leaders who are changing both attitudes and practice in their academic medical centers, hospices, hospitals, and schools of medicine, nursing, and social work. The ending of these PDIA grantmaking programs leaves a near total void in support for new faculty in palliative care. Clinical role models and academic faculty are both crucial to teach medical, nursing, and social work students the knowledge and skills they need to provide effective palliative care to patients.

• Support the development of palliative care faculty in the nation's medical schools. 
  
  

  Out of more than 100,000 total medical school faculty members in the United States today, fewer than 100 specialize in palliative care.

   

• Give grants that enable medical and nursing schools to use hospital-based palliative care programs and hospices as student training sites.
• Fund existing palliative care fellowship programs, or support the creation of new programs. 
  
  

  "Supporting palliative care specialist training magnifies the impact of a single physician. A clinician may care for 1,000 - 3,000 patients in his or her career. A specialist who serves as a consultant and referral source sees 10,000 - 20,000 in his or her career. In other words, support of one trainee in a fellowship can impact up to 20,000 patients for the better." Charles F. von Gunten, M.D., Ph.D., San Diego Hospice and Palliative Care

   

• Support the establishment of a university chair in palliative medicine. 
• Support continuing education opportunities in palliative care for practicing physicians, nurses, and social workers.
• Fund palliative care training sites where practicing doctors, nurses, and social workers can gain clinical experience and mentoring. 
• Fund faculty development programs to foster leadership in palliative medicine. Grantmakers can support existing programs, develop new ones, or fund individual practitioners to attend these programs and bring new skills and leadership back to their communities.
• Fund communication training for doctors, nurses, social workers, and pediatric palliative care professionals.
• Support palliative care education programs for members of the clergy from all faiths. 
• Fund palliative care educational initiatives in different clinical settings such as nursing homes, cancer centers, dialysis centers, large managed-care organizations, rural communities, or prisons.
• Support professional and public education programs in symptom control, pain relief, and palliative care specifically for children. 
• Fund palliative care education for emergency room personnel. 
  
  

  Many low income or uninsured people must use emergency rooms as the source for all of their health care needs, including serious illness, and few emergency physicians are trained to provide palliative care.

   

• Support the development of new models for training other medical specialists who care for seriously-ill patients, including cardiologists, geriatricians, surgeons, nephrologists, pulmonologists, oncologists, and hospitalists. 

Grantmaking to Support Research

A strong and diverse research base is absolutely essential for palliative care to become the recognized model of good clinical practice, and for palliative medicine to become an accredited subspecialty of medicine. Currently, research to improve care at the end of life is limited. With increasing support, palliative care research will change the way individuals and institutions deliver care to patients and families. By funding research-from basic science to ethics and decision making-grantmakers can help improve the quality of care for people facing the end of life as well as those with chronic illness who endure years of treatment-related pain, fatigue, nausea, depression, and other debilitating symptoms.

• Fund research within all disciplines in:
  • Pain and symptom management
  • Biological science
  • Quality-of-life measures
  • Cultural competency
  • Health policy
  • Grief and bereavement
  • Religion and spirituality
  • Communication
  • Pediatric palliative care
  • Interdisciplinary team care 
  • Psychiatry and end-of-life care
  • Service delivery models
  • Quality improvement
  • Economics, reimbursement, Medicare
  • Ethics and decision-making 
• Support networks of researchers who are collaborating on measurement and evaluation efforts.
• Fund conferences and working groups that enable experts in the field to share research findings.

Grantmaking to Improve Direct Service Delivery and Clinical Care 

Ultimately, improving services one patient, one hospital, one region at a time may make the most difference to dying people and their families.

• Fund the development of new palliative care services in hospitals. 
• Support nascent hospital-based palliative care programs.
  
  

  At least 80 percent of Americans die in hospitals and nursing homes. With even modest philanthropic support for a nurse practitioner, social worker, or physician, emerging programs may be more likely to demonstrate their value to the hospital's administration and leverage institutional funding.

   

• Support demonstration projects of all sizes that test different models of delivering care in a range of settings and communities.
• Fund palliative care consultation services to aid physicians from any specialty caring for seriously-ill patients.
• Support collaborations between hospice programs, hospitals, and academic medical centers. 
• Fund initiatives to introduce or expand palliative care services to nursing homes and assisted living facilities to help avoid hospitalization and enable residents to be cared for in comfortable and familiar surroundings. 

• Support palliative care services aimed at underserved groups in a community, such as non-English speaking families, or those in rural communities or inner-city neighborhoods.
• Support palliative care programs for indigent patients, patients with no family caregiving support, or patients without health insurance.
• Support advanced practice nurse care coordinators for patients transferring between the hospital, home, and nursing home through the course of a serious illness. 
• Fund pediatric palliative care within routine health care settings rather than only hospice. Many parents won't consider palliative care if it means foregoing potentially curative therapies. 
• Provide salary support that enables pediatric departments to hire more nurses, social workers, child life specialists, and physicians trained in palliative medicine. 
• Fund pediatric palliative care consultation services within children's hospitals. 
• Support bereavement counseling programs that specialize in a range of circumstances including sudden and violent death, or the death of a child. 
• Fund initiatives in telemedicine for rural communities to expand professional educational opportunities and access to consultations with off-site palliative care specialists. 
• Fund support services for family and informal caregivers including respite programs, home modifications or assistive devices, support and advocacy groups, and family counseling. 
• Give grants that help meet the daily needs of seriously ill patients and their families, including help locating and accessing home health services, nutrition support, and transportation.

Grantmaking to Inform Public Policy

Grantmakers have an important role to play in informing and improving public policies that affect end-of-life care, including pain management, regulation of professional practice, reimbursement, Medicare benefits, and patient care. Because appropriate pain relief is essential to quality palliative and end-of-life care, PDIA has paid particular attention to the impact on patient access to appropriate pain medication of regulations designed to prevent illegal prescription drug abuse.

• Fund programs that evaluate prescription drug regulation to help legislatures, professional licensing boards, and health care organizations re-consider and modify policies that impede appropriate pain management. 
• Fund end-of-life care policy analysis and data collection. 
  
  

  Foundation-supported studies can give local, state, and federal public officials the information they need to make sound and politically viable decisions regarding end-of-life care.

   

• Create opportunities for policymakers at all levels to learn from both palliative care clinicians and researchers. 
  
  

  The people who develop policies that affect seriously ill patients and their families should be informed by both current medical research and the clinical experiences of health care providers and their patients.

   

• Support partnerships among disability rights groups, caregiver groups, mental health organizations, advocates for senior citizens, and others who have a stake in improving end-of-life care for their members. 
• Support community coalitions of hospitals, churches, citizen associations, local businesses, and others that are working to improve end-of-life care. 
• Provide funding so that these grassroots coalitions can effectively educate policymakers about:
  • The importance of adequate reimbursement for palliative care treatment and prescription medications;
  • The limitations of the Medicare Hospice Benefit, and suggestions for improvement;
  • The experiences and needs of family caregivers; and
  • Ways to revise existing state policies and create new policies to improve end-of-life care.
• Fund opportunities to give policymakers the chance to hear from bereaved family members about the quality of care available to their loved ones-whether it was inept and unacceptable or skilled and compassionate. 
• Support national organizations that are already working to examine and transform public policy affecting end-of-life care. 

Grantmaking to Improve Public Engagement

Ongoing public discussion is essential to a better understanding of modern experiences of dying, the options available to patients and families, and obligations of communities to those approaching death. Patients and their families from all cultures should expect and receive skilled, dependable, and compassionate care at the end of life. Foundations can play an important role in helping the public understand that such care is possible right now, and that they must demand quality care at every stage of illness.

• Support community outreach and education about advance care planning. 
  
  

  Living wills, advance directives, and health care proxies are essential tools that enable people to make informed choices about end-of-life care.

   

• Fund culturally appropriate translations of patient education and advance care planning materials for non-English speakers. 
• Enable local school districts to offer grief training programs for teachers, school psychologists, nurses, counselors, and social workers.
• Fund public education campaigns tailored to the needs of specific cultural, religious, geographic, or ethnic communities. 
• Make information available to help people understand and access the Medicare Home Health Benefit and the Medicare Hospice Benefit. 
• Enable local hospitals to develop and distribute high-quality patient education materials about palliative care, pain management, and decision-making. 
• Make sure that hospital pediatrics departments have a range of support services to help parents cope with their child's illness and make informed decisions about treatment. 
• Fund hospital and community workshops that teach people strategies for effectively communicating with their health care providers.
• Support documentary films, radio, photography, poetry, dance, performing arts, and literature that explore the diverse human experiences of illness, dying, and bereavement.

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